Bibliometric analysis of global sickle cell disease research from 1997 to 2017 - Table 6: Top 20 most productive institutions
Source: Okoroiwu HU, López-Muñoz F, Povedano-Montero FJ. Bibliometric analysis of global sickle cell disease research from 1997 to 2017. Hematol Transfus Cell Ther. 2020 Dec 28:S2531-1379(20)31305-5. doi: 10.1016/j.htct.2020.09.156. Epub ahead of print. PMID: 33423980.
Building access to care in adult sickle cell disease: defining models of care, essential components, and economic aspects
Abstract: Sickle cell disease (SCD) is the most common inherited blood disorder in the United States. It is a medically and socially complex, multisystem illness that affects individuals throughout the lifespan. Given improvements in care, most children with SCD survive into adulthood. However, access to adult sickle cell care is poor in many parts of the United States, resulting in increased acute care utilization, disjointed care delivery, and early mortality for patients. A dearth of nonmalignant hematology providers, the lack of a national SCD registry, and the absence of a centralized infrastructure to facilitate comparative quality assessment compounds these issues. As part of a workshop designed to train health care professionals in the skills necessary to establish clinical centers focused on the management of adults living with SCD, we defined an SCD center, elucidated required elements of a comprehensive adult SCD center, and discussed different models of care. There are also important economic impacts of these centers at an institutional and health system level. As more clinicians are trained in providing adult-focused SCD care, center designation will enhance the ability to undertake quality improvement and compare outcomes between SCD centers. Activities will include an assessment of the clinical effectiveness of expanded access to care, the implementation of SCD guidelines, and the efficacy of newly approved targeted medications. Details of this effort are provided.
Source: Kanter J, Smith WR, Desai PC, Treadwell M, Andemariam B, Little J, Nugent D, Claster S, Manwani DG, Baker J, Strouse JJ, Osunkwo I, Stewart RW, King A, Shook LM, Roberts JD, Lanzkron S. Building access to care in adult sickle cell disease: defining models of care, essential components, and economic aspects. Blood Adv. 2020 Aug 25;4(16):3804-3813. doi: 10.1182/bloodadvances.2020001743. PMID: 32785684; PMCID: PMC7448595.
California Sickle Cell Action Plan 2018 Executive Summary
The California Sickle Cell Action Plan (CA-SCAP) – informed by diverse California stakeholders – creates a roadmap forward. This plan contains long-term goals and strategies to improve healthcare systems, and increase education,- and awareness about sickle cell disease and sickle cell trait in California, with the ultimate aim of improving the quality of life and longevity of those living with the disorder now and in the future. While our goals are ambitious, our priorities are clear.
For details, please visit:
https://ca-actionplan.pacificscd.org/wp-content/uploads/2018/12/California-Action-Plan.pdf
Overview of Recommendations and Strategic Plan: September 2020 - Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action
National Academies of Sciences, Engineering, and Medicine convened an ad hoc committee to develop a strategic plan and blueprint for addressing sickle cell disease (SCD) in the United States. The committee made recommendations regarding:
- limitations and opportunities for developing national SCD patient registries and/or surveillance systems;
- barriers in the healthcare sector associated with SCD and SCT, including access to care and quality of care, workforce development, pain management, and transitions from pediatric to adult care;
- needed innovations in research, particularly for curative treatments such as gene replacement/gene editing and increasing awareness and enrollment of SCD patients in clinical trials; and
- the expanded and optimal role of patient advocacy and community engagement groups.
For details, please visit:
https://www.nap.edu/resource/25632/Sickle%20Cell_Overview%20of%20Recommendations%20and%20Strategic%20Plan.pdf
When Actions Speak Louder Than Words — Racism and Sickle Cell Disease
"There may be no population of patients whose health care and outcomes are more affected by racism than those with sickle cell disease (SCD). Patients with SCD are too often marginalized and dismissed while seeking medical care when their bodies hurt and they cannot breathe. As medical leaders around the United States issue statements denouncing racial injustice and calling for us to “dismantle racism at every level,” we must ensure that these pledges translate into durable improvements for patients with SCD."
In this article are also "Proposed changes to reduce the impact of racism on patients with sickle cell disease (SCD) in the United States".
Source: Power-Hays A, McGann PT. When Actions Speak Louder Than Words - Racism and Sickle Cell Disease. N Engl J Med. 2020 Nov 12;383(20):1902-1903. doi: 10.1056/NEJMp2022125. Epub 2020 Sep 1. PMID: 32871062.